By Jocelyn Wiener.
Last December, Brighid FitzGibbon’s son, Evan, entered a catatonic state. Acute psychosis had hit suddenly a few weeks earlier, toward the end of fall semester of his sophomore year at Bard College in upstate New York. Gripped by terrifying delusions, his body began to shut down.
FitzGibbon and her husband, Taylor, rushed their 20-year-old son to a hospital in Sonoma County, where they live. An acquaintance told them about a promising program for young people experiencing early psychosis. But the family quickly discovered a problem: the program didn’t exist in their county.
In California, geography creates significant barriers to people getting early psychosis treatment, as it does for an array of other evidence-based mental health treatments. That’s partly because California’s 58 counties have 58 different public mental health programs, each with their own set of covered services.
“If you get on a bus in Northern California and take it to Southern California, you get different services depending on where you step out,” said Carmela Coyle, president and CEO of the California Hospital Association, a lobbying group for the state’s hospitals. “That’s just inequitable.”
Dr. Tom Insel, whom Gov. Gavin Newsom recently appointed as his top mental health advisor, has likened the fragmented system to playing the piano with 58 fingers.
“There’s no central leadership, really,” said Insel, the former director of the National Institute of Mental Health. “If you ask, ‘What are the counties trying to accomplish? What are their goals? What is their North Star?’ I can’t tell you that. There’s a North Star in L.A. County, in San Mateo, in Alameda. They’re not the same.”
Insel and many other mental health experts say California offers too little guidance and oversight to ensure fair access to mental health treatment, missing opportunities to spread best practices from individual counties statewide.
He wants the state to identify specific goals for mental health outcomes, such as reducing suicides and the incarceration of people with mental illness. He also wants the state to help counties achieve those goals. Among his top priorities: early psychosis intervention.
“For most kids who can get that kind of treatment soon after the onset, they’ll do quite well,” Insel said. “They can go on to really have a life that does not happen today with a diagnosis of schizophrenia.”
About 100,000 adolescents and young adults nationwide experience first-episode psychosis each year, according to federal figures—and three out of 100 people will experience psychosis at some point in their lives.
In recent years, policymakers and mental health providers have grown enthusiastic about early psychosis intervention programs, which typically involve intensive counseling, psychiatric treatment and peer and family support, with trained providers working closely together to coordinate each patient’s care.
In 2016, the federal government set aside 10% of states’ Community Mental Health Block Grants for early psychosis programming; in California, that totals $9.5 million. Legislators this year have proposed allocating $20 million for early psychosis programming in California’s new budget, which is $5 million less than the governor sought.
Done right, research shows, the programs can dramatically help young people experiencing psychotic symptoms, with lasting benefits. The converse is also true: The longer psychosis goes untreated, the worse the outcome. People with an initial diagnosis of psychosis are approximately eight times as likely to die during the year following their diagnosis as people in the general population. The cause is often suicide.
According to one national study, clients in early psychosis programs stay in treatment longer, experience fewer symptoms and are more involved in work or school, compared with patients in other care settings—provided they get into treatment fast. A Canadian study published last year in the American Journal of Psychiatry showed that people who participated in early psychosis intervention after their first episode were four times less likely to die.
In the United States, on average, individuals experiencing psychosis went without treatment for 74 weeks. Other countries have dramatically reduced this number.
Christine Marie Frey, now 18, attended a program in San Diego after she began to hear demons as a 12-year-old. It offered personal and occupational therapy, as well as help with mindfulness, medication and school. Frey found comfort in talking with peers in similar circumstances.
“They helped me realize, not just how to cope—they helped me feel like my own self again,” she said. “I went in there ready to give up.”
Early psychosis interventions can target young people with symptoms that put them at high risk for psychosis, or those who have had their first experience of psychosis. Those in the first group might hear whispers and wonder if their brain is playing tricks on them; the second group is more likely to believe the voices are real.
In California, only about two dozen counties have early psychosis programs. Most lack the money or capacity to make them available to all county residents. Often, the only people eligible are those without insurance or on Medi-Cal for low-income Californians, though in some cases private insurers pay for patients.
Growing up, Evan had always been a strong student, and a talented musician and athlete, his mother said. But as he approached the end of his fall sophomore semester, he became increasingly worried about choosing a major and meeting music deadlines.
For several nights, he stopped sleeping. On his 20th birthday, a friend rushed him to the emergency room. He received medication to help him sleep, but continued to get worse. His father raced across the country to bring him back to Sebastopol, assuming the comfort of home would help. Then the delusions started.
After his parents heard about the early psychosis program, they said they begged their insurance provider, Kaiser Permanente, for a referral, but Kaiser refused.
In an emailed statement, Dr. Sameer Awsare, associate executive director of Kaiser’s Northern California medical group, said Kaiser is not simply an ‘insurer’” that pays for outside services.
“Kaiser Permanente is an integrated health care system that provides expert, evidence-based medical care for our members, including in the area of psychosis,” Awsare said. He added that Kaiser follows federal “best practices” for cognitive behavioral treatment of psychosis and multi-family group treatment, and when clinically appropriate, Kaiser does refer members to outside programs.
He cited patient confidentiality in declining to discuss Evan’s case.
But Evan’s parents didn’t feel that what they said Kaiser was offering—a general intensive outpatient program in which most patients didn’t have psychosis, a meeting with a psychiatrist every few weeks, and therapy every week or so—was enough.
So Evan’s father drove him every week or so to the UC Davis Early Diagnosis and Preventive Treatment Clinic, a state-of-the-art program in Sacramento. The drive was about four hours round-trip, and the family paid thousands of dollars for his care, with the help of a GoFundMe account set up by his elementary school teacher.
Evan stabilized and began to improve, his mother said. But the long drives wore on her son and his father, who had severe back pain. And the out-of-pocket costs became prohibitive. Coming from so far away, it was difficult for Evan to participate in the peer groups. Although Brighid FitzGibbon said they would have liked to continue, they made the difficult choice to stop a few months into the program in May.
“I don’t know,” said FitzGibbon, whose son gave permission for her to share his story. “It’s just disheartening to see how broken the system is. I think we did the best we could.”
Bill Carter, who recently became Sonoma County’s mental health director, said he is committed to bringing an early psychosis program there, calling it “one of the best things going.”
“It’s the kind of thing we in the mental health field have been waiting for,” he said. “Historically, schizophrenia and other thought disorders have the potential really just to ravage someone’s life.”
Carter previously worked for the California Institute of Mental Health, leading efforts to disseminate evidence-based practices, including early psychosis treatment. He also served as mental health director of Napa County, which beginning in 2014 has made early psychosis treatment available to any county resident who needed it, regardless of insurance.
Napa managed this in part due to funding from One Mind, a nonprofit founded by the local Staglin family, whose son, Brandon, recovered from schizophrenia in the 1990s and is now the president. The Napa program also receives support from local vintners, a large charity auction and a variety of federal and state funding sources.
But despite Carter’s commitment to bringing early psychosis programming to Sonoma County, he has encountered significant obstacles. After 2017’s wildfires, the county is facing huge budget shortfalls—and making steep cuts to mental health care.
Convincing the public to invest significantly in a prevention program for relatively few people is challenging, Carter said, especially when so many very sick people are going without care. He’d prefer that the state provide centralized leadership and support to help counties fund and build early psychosis programs.
Why doesn’t that exist? Why do 58 counties do things 58 ways? By design. Back in 1991, the state faced a budget crisis, and in a process known as “realignment,” it shifted responsibility for mental health delivery to counties.
It also assigned counties dedicated funding from sales taxes and vehicle license fees, creating formulas based on how much each county was spending at the time. Over the years, these funds have neither kept pace with need nor been adjusted to account for changing populations.
“There’s not necessarily rhyme or reason to why a county chooses to provide some services and not others. The best way to describe it is, it’s a broken delivery system.”
In 2004, California voters passed the Mental Health Services Act initiative, levying a tax on the state’s millionaires. It has pumped in about $15 billion more for mental health, which the stated doles out to counties to promote flexibility.
Counties say they need to be nimble. In a state as vast and varied as California, the issues facing rural Trinity County differ from those of urban Los Angeles. But the approach has disadvantages.
“There’s not necessarily rhyme or reason to why a county chooses to provide some services and not others,” said Sheree Lowe, vice president of behavioral health for the California Hospital Association. “The best way to describe it is, it’s a broken delivery system.”
What the state needs, Lowe contends, are core services available in every community. Now, she says, the state doesn’t track what services are provided in each county.
In 2012, the state shuttered its Department of Mental Health, and moved many of its staff members to the Department of Health Care Services. Some feel the move further sidelined mental health.
“I think counties have been cast adrift, really,” said Randall Hagar, government relations director for the California Psychiatric Association, which represents the interests of the state’s psychiatrists. “I would agree with the assessment that there is still no state leadership.”
This isn’t true everywhere. Oregon has a comprehensive, state-run early psychosis program. New York state created OnTrackNY, a state-led effort to provide coordinated early psychosis care to young people. Dr. Insel said he would like to see California implement a similar effort.
Many people see hope for the future of early psychosis intervention in California because of the UC Davis clinic that Brighid FitzGibbon’s son Evan attended—and its director, Tara Niendam. In 2008, Dr. Cameron Carter, a prominent psychiatrist with a strong interest in early psychosis, recruited her to the Sacramento clinic he’d founded.
Today, the staff includes psychiatrists, therapists, a family advocate and a specialist in education and employment, as well as a worker dedicated to meeting patients’ social needs, such as housing. Patients participate in peer and family support groups.
Too often, Niendam says, individuals “just float around in our system receiving sometimes inadequate care.” Effective mental health care doesn’t simply make symptoms go away, she said. It gives individuals and families the tools to pursue meaningful lives.
“That’s more than a pill can do,” she said.
One of the clinic’s patients, Meheretab — who asked that his last name not be used — began attending Niendam’s clinic after suicidal thoughts and hallucinations. Meheretab, who has Medi-Cal, said the infrequent treatment he was receiving through Kaiser wasn’t working. Niendam’s clinic felt safe. With a combination of medication, counseling, job support and a peer group, he said, his depression subsided and the hallucinations ended.
“I feel like I’m in a better place right now,” he said.
Niendam helped Napa and Solano counties start early psychosis programs and is currently doing the same with Yolo County. Small counties can struggle to hire and train the staff necessary for a full early psychosis program, so she is developing a way for them to contract with larger counties or use telemedicine. She wants to expand the treatment model statewide.
Watching people who have been hospitalized 10 times return to school or hold a fulltime job, and showing them they can recover, “are the things that keep me going every day,” she said. “It’s game-changing for everyone. It’s super exciting to be part of that.”
Jocelyn Wiener is a contributing writer to CALmatters. This story, the fourth in our series “Breakdown: Mental Health in California,” was supported by a grant from the California Health Care Foundation.